March is National Cerebral Palsy Awareness Month

CP Funding

March is National Cerebral Palsy Awareness Month – a time to focus on educating the public about CP. That means raising awareness about the need for more CP research!

As defined by the Centers for Disease Control and Prevention, “cerebral palsy is a group of disorders that affect a person’s ability to move and maintain balance and posture.”

CP is also “the most common motor disability in childhood.” Despite its widespread impact, CP research has historically been drastically underfunded.

But CP advocates received some good news this month when the United States Congress announced the Cerebral Palsy Research Program Authorization Act, a new bipartisan law authorizing $5 million for CP research. The research will focus on three areas: prevention, diagnosis and treatment. It was co-sponsored by Congressmen Brian Fitzpatrick (R-PA) and Emanuel Cleaver (D-MO).

In his introduction to the bill, Steve Cohen explained its significance as follows: “Although cerebral palsy affects one out of every 345 children, it is the most prevalent disability that has no designated federal funding for research. No dedicated federal funding for cerebral palsy means there are fewer treatment options, less prevention, less education, and a lack of standards of care across lifespans. There is not currently a reliable system to count how many people in the United States have cerebral palsy, so the estimates on cerebral palsy prevalence are just that – estimates. The Cerebral Palsy Research Program Act addresses these critical oversights.”

Though the CP Research Program Act represents the first dedicated federal funding for CP research, CP organizations have long advocated for research dollars. Some organizations have offered grants for CP research.  Here are some of the important research studies currently underway.

In September 2022, UCP announced $80,000 in research grants to the following institutions:

  • Cincinnati Children’s Hospital Medical Center: $20,000 for research about progression of CP in the first two years of life
  • Texas Woman’s University/State of Texas Early Childhood Intervention: $19,968 to fund an implementation and efficacy study on the Therapy Together program with Early Childhood Intervention. According to UCP, “Therapy Together is a parent led pediatric intensive constraint induced movement therapy (P-CIMT) program for young children (3 months-2 years 11 months) with unilateral cerebral palsy”
  • Gillette Children’s (UCP of Minnesota)$20,000 for a study that measures use of the affected limb in children with hemiplegic cerebral palsy (paralysis is on one vertical half of the body) as following infancy initiated constraint-induced movement therapy
  • James Madison University: $20,000 for the study: Transforming Health through Relationships via In-Person and Virtual Environments (THRIVE) Cerebral Palsy

The Cerebral Palsy Alliance Research Foundation also supports CP research. Its funding priorities include early detection & early intervention; chronic pain technology; and regenerative medicine genomics. The Foundation offers project grants ranging from $70,000 – $180,000 but will consider higher grant amounts in some cases. They also offer research fellowships up to $75,000.

Current research projects include:

  • Shenandoah Robinson, MD, PhD, Johns Hopkins University
    Making the Most of Mother Nature: Neonatal Combinatorial Therapy with Endogenous Neurorepair Agents
  • Dr. Zachary Vesoulis, Washington University
    Newly Developed Oxygen Monitoring Systems to Reduce CP-Related Brain Injury
  • Dr. Zachary Vesoulis, Washington University
    NIRS (Near infrared spectroscopy (NIRS) an optical imaging technique used to monitor the oxygen in tissues) Monitoring to Stop Injury
  • Dr. Srinivas Manideep Chavali, University of California, San Francisco
    Improving Myelin Production as a Therapeutic Strategy to Treat CP
  • Nathalie Maitre, MD, Nationwide Children’s Hospital, Columbus, OH
    Randomized Controlled Trial of Feeding Intervention with Pacifier Activated Device and Mother’s Voice in Infants at High-Risk for Cerebral Palsy
  • Dr. Evelyn Shih, Children’s Hospital of Philadelphia
    Dissection of the Bioenergetic Network of the Neurovascular Unit in Focal Ischemic Stroke: Building a Foundation to Design Mitochondrial Therapeutics for Childhood Stroke
  • Assistant Professor Colleen Peyton, DPT, Northwestern University
    The Ontogeny of Fidgety Movements in Infants at Risk of Cerebral Palsy

We can’t claim to understand the science behind all these studies. Nevertheless, we are encouraged that scientists who do understand, are engaged in this critical research. More dollars are sorely needed to support even more study!

Don’t forget to wear your green this month to raise awareness about CP!